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Looking for advice - advanced prostate cancer

peteclick
Posts: 6
Joined: Aug 2011

I am a new member to the network.

I was diagnosed with prostate cancer in 2004 and had a radical p in Feb. of 2005, Davinci surgery. Gleason score post surgery was 8, and the margins were negative. For the first few years everything was going fine with psa readings <.2, but now it has started to rise. The readings were as follows:
1/09 0.2
7/10 0.9
10/10 0.6
5/11 1.8
7/11 3.0

My urologist recommended a bone scan and ct scan which took place on 7/20/11. The results were negative.

Last week I saw an oncologist at a cancer hospital, and she did not make a definitive recommendation as to treatment. She felt that any radiation treatment of the prostate bed at this point would probably not be productive since the rapidly rising psa indicates that the cancer has probably spread to other parts of the body. Also, she gave me information on Degarelix (Firmagon) and Leuprolide (Lupron) as well as a study for which I am an eligible candidate.

I have decided to wait at least until my next PSA test in November before starting any kind of treatment other than some dietary changes.

I am writing on this forum to seek your advice as to when, based on your experiences, I should start hormone therapy or some other treatment.

Thank you for your help.

Old-timer's picture
Old-timer
Posts: 109
Joined: Apr 2011

In a nutshell, here's what has happned to me. In July 1991, at age 65, my PSA was 4.0 and a biopsy said I had prostate cancer. I underwent RP in September that year. Gleeson score 3+4 = 7). Surgery went OK and PSA dropped to 0 and stayed there 13 years. It then began a slow creep upwards. In 2005 it had reached 1.16. Radiation was recommended. After 36 sessions of that, the PSA continued to go up. After three more years, in June 2008, with PSA at 20.4, I went on hormone therapy. The PSA immediately dropped to <.01 (undetectable)and has remained there ever since. My uro says the cancer is in remission.

Side effects? You bet. The one that is a real nuisance to me is a bad dose of incontenance. I am told this is due to scar tissue in my urethra. This showed up after the radiation treatments and I suspect radiation as being the cause. However, my uro says it could be a result of the original surgery. I am not bitter about this condition. I'm living (coping) with it and looking at options to improve it. Possibly the AUS 800 could be an answer, although at my age (85), I am questioning the efficacy of that option.

Back to your question. Each prostate cancer case is different from others; consequently no
treatment option will solve all problems. No size fits all, in other words.

What would I do differently if I had it to do over? I am tempted to say skip the radiation. But the experts said it had a 67 percent chance of success. Taking it seemed to be worth a try, and I really don't regret having done so. By taking the treatment, I learned that I was in the 33 percent group!

Based on my understanding and my experience, I believe you can safely wait to begin hormone therapy until your PSA reaches at least 5.0 or 10.0. I waited until it reached 20.0. That turned out to be OK.

Hope this is helpful. Best of luck to you.

peteclick
Posts: 6
Joined: Aug 2011

Thanks so much for sharing your story and advice. It was very helpful to me. I have ruled out the radiation treatment based on the oncologist's assessment that the cancer has probably spread to other areas from the prostate bed. My main concern now is: if and when to start the hormone therapy and which hormone would be the best to use if I do start. I am thinking right now that your suggestion of waiting until it is 10 might be what I would like to do. Based on the doubling time, I doubt that this will take very long.
Thanks again for your reply, and I hope that your PSA remains undetectable.
Pete

JoelT
Posts: 4
Joined: Jul 2007

The operating assumption is that with a recurrence PSA in excess of 1.0 or so signals that the cancer probably has traveled outside the immediate area of the prostate bed. Therefore, with a PSA of 3.0 salvage radiation would not resolve the issue. However, you can contact Sands Lake Imaging in Orlando Fla where they are imaging recurrent disease using a different process to get an actual visual so that radiation could be targeted (this is an unapproved treatment and has not been proved).

Your PSA doubling time is 8.34 months which is moderately aggressive (under one year is considered aggressive), so treatment in the near term is required. Since the cancer is considered to be systemic you will requires a systemic treatment and the next best treatment would be hormone deprivation (ADT). Intermittent ADT is now considered a good choice as it allows time for your body to recover between treatment protocols.

Degarelix is the new comer on the block. It prevents initial PSA flare, however there are many reports of significant injection site problems (I stopped using it because of these problems). A ten day course of Casodex prior to the hormone blockade will prevent the PSA flare from having a negative effect on the cancer.

I suggest that you join the Malecare Advanced Prostate Cancer on-line support group where over 650 of us join together and pool our knowledge about advanced prostate cancer and how to survive it. Go to Yahoo groups and search for advanced prostate cancer. You should also go to the Advanced Prostate Cancer Program where we have posted teleconferences about the disease, a free downloadable guide to Coping with Advanced Prostate Cancer, a link to the advanced prostate cancer blog as well as a number of other aides. The program information can be found by going to the Malecare web page at Maleccare.org and clicking on to the purple tab on the upper left of the page marked "Advanced Prostate Cancer Programs

Joel
Director of Advocacy & Advanced Prostate Cancer Programs
Survivor of Advenced Prostate Cancer, Thyroid, Kidney cancer and Melanoma

peteclick
Posts: 6
Joined: Aug 2011

Thank you Joel for your very informative response. I will take your advice and join the groups that you have suggested.

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

Pete

Your PSA chronology indicates recurrence and a very aggressive type of cancer. The Gleason score of 8 (probably 4+4) is of the type of cells with high probability for spread. Your case is risky but without any confirmation of distant metastases your case could be considered yet as localized.
The pathologist report from surgery in 2005 indicates negative margins but you do not comment on metastasis (positive/negative) to lymph nodes. Surgeons at the time of surgery usually dissect some close nodes to check for metastasis, particularly in guys with Gs above 7.

This would be an important piece of information because it is known that cancer spreads firstly to nearby lymph nodes and from there to bone and other organs. Your oncologist is exactly looking into the problem to identify where cancer is set. If considered Localized, RT with hormones is recommended and successful. The planning would include radiation of a larger areas predefined. However, if not localized, salvage radiotherapy may be useless (may be the case of Old-Timer, and one would end up with added side effects.

The negative bone scan and CT scan is not a surprise when PSA is lower than 10. Tumours smaller than 0.07 mm are hard to be caught on this type of scans. The test that have shown success in identifying metastasis at the lymph nodes (in the iliac area) is the USPIO (ultrasmall superparamagnetic iron oxide nanoparticles) MRI, which some guys reported to be available at Dattoli cancer centre. (http://csn.cancer.org/node/221178).
This is the substitute of the famous Combidex test developed in Holland that was successful in pin pointing PCa that had migrated to remote parts of the body. You can read details on both these tests by googling their names.

I cannot understand how Joel above got you a PSADT of 8.34 months. The doubling time is an exponential calculation and there are several sites on the net (MSKCC) where you can introduce your own PSA chronology and get the answer straight.
Your PSADT in the last three measurements indicate to be 2.4 months, and from your nadir at Jan 2009 it indicates to be 3.4.
Both PSADT are considered critical (less than 3). You can read about the meaning of this PSADT and its relationship to recurrence from a salvage treatment in this study with representative tables for survivals;
(http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2667701/)

I do not agree with the threshold of PSA=10 to start hormonal treatment. You are in recurrence and your status is all indicative of uncontroled progress of cancer. In fact I am surprized that your oncologist have not recommended already for you to get a LHRH agonist (Lupron, Eligard or Firmagon) while waiting for a final decision on a salvage treatment or trials.

I do not know your age or any other evident aspect (medical problem or any permanent side effect from RT) which are required for in a proper diagnosis of you present status. Such could interfere with your possibility of entering into a Clinical Trial. If recommended by your doctor, you should be aware of its contents and know exactly if you do not become of the placebo group. You need to get a treatment to control the advance of the bandit.

I recommend you to investigate about salvage treatments, their side effects and diagnosis, etc. for recurrence cases. An excellent, easy to read and practical book for your case is the “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for recurrence systemic cases. This famous oncologist is himself a survivor of a challenging case on his 12 year of survival.
You can also listen to his videos on recurrence accessed at his net site, one being “PSA only Recurrence Disease”;
(http://askdrmyers.wordpress.com/?utm_content=amyson%40comcast.net&utm_source=VerticalResponse&utm_medium=Email&utm_term=here&utm_campaign=Cancer%20Recurrence%20After%20Radical%20Prostatectomycontent)

Another thread in this forum addressing recurrence with links can be seen here;
(http://csn.cancer.org/node/222590)

Welcome to the board.
Hope this post helps in your quest.

VGama

JoelT
Posts: 4
Joined: Jul 2007

Using the Sloane nonogram at http://nomograms.mskcc.org/Prostate/PsaDoublingTime.aspx, assuming that all PSA tests were performed on the 15th of the month as the specific dates were not supplied the nonogram calculated a doubling time of 8.34 months.
Joel

JoelT
Posts: 4
Joined: Jul 2007

Using the Sloane nonogram at http://nomograms.mskcc.org/Prostate/PsaDoublingTime.aspx, assuming that all PSA tests were performed on the 15th of the month as the specific dates were not supplied the nonogram calculated a doubling time of 8.34 months.
Joel

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

Joel

You are right, MSKCC nomograms gives different results. For the last three tests the PSADT equals to 3.99 and for the total data is above 8. I have never realized and have been suggesting those nomograms but never made a comparison of the results between handmade exponential calculations and those at their site. Maybe the difference is in the “variables” (error probability) introduced in the mathematical formula by their researchers. (Am I correct?)

I read in the past and discussed with famous survivors in other forums about the controversy on the clinical use and the need of FDA’s approval of nomograms in the diagnosis of prostate cancer cases (ex: Kattan variables, Partin tables, Han tables, etc.). These are in fact tools to guide practice but some doctors actually do not recognize them.

Last year I read in the EAU Guidelines (European Association of Urology) about Ponholzer’s (Danube Hospital, Austria) nomograms which formula does not include variables. This nomogram is available freely in the net at this site;
http://adam.drahtwarenhandlung.at/webapp/mg2008/chapter_prostata4/example_psa
The variable portion can be imputed at random which allows doctors to account for any error in assays, day of drawing blood, laboratory reliability, etc.
I had a close look into both nomograms and would say that MSKCC may provide positive parameters in their results whether Ponholzer’s is based on each doctor’s own idea of variables for each particular case.

In plain calculation of the PSADT of Pete’s case, using three results since nadir (0.2; 0.6; 3.0) and a variable of 10 percent, the result is: PSADT=3.4 months with a maximum error of 4.6 months. That may be the variable used at MSKCC nomogram. Nevertheless, a “beneficial” outlook for Pete with a risky case could lead to a precarious status. He is the only one to decide on which result to take.

There is a publication on the above matter at PubMed which site I used many times on my researches and that I take as reliable.
http://www.ncbi.nlm.nih.gov/pubmed/20592353

Thanks for drawing my attention.

VGama

peteclick
Posts: 6
Joined: Aug 2011

Vasco,

Thank you for all of the information that you have provided. It has given me a lot of home work. Last night I watched several of Dr Myer's videos, and I have ordered his book. After I have read the book, I am sure I will have more questions, especially when it comes to treatment options. I see already that Dr Myers recommends intermittent hormone therapy, and I surely like the sound of that.

I left a few thing out of my original post. I am 71. My gleason score post surgery was 8 (3+5). Is that better than 4+4?

The tumor had escaped the capsule, but the margins were negative. I can see no evidence that the pathologist tested tissue from the lymph nodes.

The oncologist informed me about a clinical trial for which I am eligible that compares the effects of an investigational agent (MK-2206) and Bicalutamide versus Bicalutamide alone. I am hesitant to join such a trial because of the possibility of being in the group getting the placebo. Do you have any thoughts on this?

I also want to thank you and Joel for your efforts and informative discussion regarding the doubling time. I know how crucial that is, and that is one reason I wanted to wait for one more PSA test before deciding on a treatment.

Thanks again, Pete

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

Pete

I am not a doctor. My opinions are as that of a layman based on my own researches and knowledge gain since I became a permanent member of this boat in 2000. You should do your own researches and discuss with your family and doctors before making any decision on your case.

Gleason score 8 in both grades (4+4) and (3+5) present high aggressive types of pattern 4 and 5. However, in the combi (3+5) if the involvement of grade 5 is small relatively to the total (ig; 3=75%; 5=25%), it could be taken as better than the other combi with only aggressive ones (grade 4).
I would say that your Gleason indicates that lots of cancerous cells are of the intermediate risk for aggressivity.

The lack of info in the pathologist report on analyses of lymph nodes means that they have not been dissected at surgery. In 2005 (the initiation period of Davinci) the procedure would not include dissection of lymph nodes. Only few doctors actually would stop the robot and use their own hands to reach and cut the nodes out.
The principle of Davinci is to have the lesser incision possible (enough for the robot-arm) with a quick surgery to lead to a faster healing. Judgement on dissection of the nodes is done in advance with basis on the data from diagnosis.
What is striking in the report is the positive extra-capsular extension (tumor had escaped the capsule). This could very well mean that cancer is at close lymph nodes or relates to localized micro-metastasis.
The typical protocol for treating these cases is IMRT plus HT. I would suggest you read about this modality and that you get a second opinion from another oncologist. (Myer’s book addresses this too)

Hormonal treatment (HT) alone is also a viable option. It does not cure but gives very long periods of control on cancer progress by “starvation”. It aims in blocking the testosterone that feeds cancer and promotes its survival.
There are reported cases of guys on HT as their prime therapy in over 15 years of success. It can be administered intermittently (on/off periods on the drugs) with a relief from drugs side effects; and its protocols are for single blockade (ADT1) with a LHRH agonist; double blockade (ADT2) with an added anti-agonist like Casodex; and ADT3, triple blockade with added 5-ARI drug that stops the manufacturing of a more powerful type of testosterone named dihydrotestosterone (DHT).

What is been proposed to you in the trial is the use of an anti-androgen bicalutamide (Casodex) which is a hormonal treatment drug taken alone (placebo) or in combination with the Akt inhibitor MK-2206.
Bicalutamide acts on the cancer cell by attaching itself to cell’s receptors inhibiting the cell from feeding on testosterone, while the Akt inhibitor will attempt to stop cell proliferation (duplication).
The trial in my opinion can be beneficial to your case if they place you on the group taking the combo. I say this because in the hormonal context of treatment, Casodex is seen as the “mild” drug. LHRH agonist is the “heavy duty” drug that blows the cancer, by “closing down” the “factory” producing 95% of testosterone (chemical castration at the testis).
I do not know the length of the period of the trial, but you will not be allowed to take any other drug while on trial, and bicalutamide may not be enough in your risky case.

MK-2206 “drug” is on ASCO’s list of presented Trials since 2009. Merck Pharmaceuticals is the “owner” and the drug is part of the newer type of medicines “manufactured” with targeted intent to directly affect cancerous cells.
Some of these new generation “targeted type drugs” recently approved and already successfully treating PCa cases, is Xgeva (denosumab) that acts at cancer in bone and Zytiga (abiraterone acetate) that acts in intratumoral treatment. These drugs are specific to cancer cells, minimizing their effect on healthy cells

For details on the trial see this link;
http://www.clinicaltrials.gov/ct2/show/NCT01251861?term=MK-2206&rank=27

You can read publications on the drug in this site;
http://www.merck.com/licensing/our-partnership/astrazeneca-partnership.html

Here are press news about Merck’s Trials Network where MK-2206 is to be investigated, your doctor is connected with one of this centres authorized for the trial;
http://www.news-medical.net/news/20100604/Merck-launches-Oncology-Collaborative-Trials-Network.aspx

Hope this post answer your quest.

Take care.
VGama

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